Men with MS struggle with lifestyle changes

When Bob Ludwikowski was diagnosed with multiple sclerosis in 1996, each day became a fight.

He left his full-time management job at UPS and went on full disability in 1997.

“You go from all green lights to no more green lights — they are all yellow,” said 56-year-old Ludwikowski.

According to the National Multiple Sclerosis Society, 400,000 people battle MS in the United States. It is a chronic disease that attacks the central nervous system — the brain, spinal cord and optic nerves. As in other autoimmune diseases, MS is significantly more common (at least two to three times) in women than men. Dealing with the disease isn’t any easier, though.

Merle Weiss, 55, was diagnosed with MS 33 years ago.

“I’ve pretty much accepted it. I do whatever I can so that I can get around and that,” said Weiss, who lives in the Toledo area. “I love to travel and go places.”

Many symptoms are attributed to the disease, which affects sufferers differently. Poor vision, loss of memory and a sense of imbalance are just some of the symptoms. Some people diagnosed with MS use a cane or wheelchair to move around.

Weiss said he uses a scooter and has a ramp to get into his car and home.

“My youngest daughter — she’s 14 — doesn’t remember me without having to use a cane or some type of aid when walking,” Bob Schuster said.

Schuster, 48, was diagnosed in 1996, and said his diagnosis came as a relief.

“When I was first diagnosed, I was relieved that they found something because I knew that I wasn’t imagining things. It wasn’t cancer or something more severe. It takes a while for most people to be diagnosed because you have to go through so many tests,” he said.

For men with MS, they lose all, or most of, their ability to play sports — a beloved pastime.

“Basically I just miss playing a lot of sports. Even like bowling and tennis, I can’t really do now,” Weiss said.

Ludwikowski said he used to be active athletically, but playing baseball and racquetball became difficult when his MS affected his balance.

“I just couldn’t do the things I was used to do and it was depressing,” he said. “After being so active, for lack of a better term, A-type personality, I’m still learning how to pull back.”

Weiss, who owned his own grocery store until five years ago, stays busy volunteering. He volunteers at the Stranahan Theater, the Valentine Theatre, The Village Players, and like Ludwikowski and Schuster, volunteers for the National Multiple Sclerosis Society, Northwestern Ohio Chapter.

“I just try to stay strong and keep going,” Weiss said. “It doesn’t do any good just to lay around or feel sorry about yourself.”

Ludwikowski said staying active and volunteering helps him stay positive and avoid self-pity. He spent time as a counselor at the MS Society, but found himself depressed by the people who had advanced stages of MS.

“There are a lot of other people that are a lot worse off than I am,” he said. “If it’s my burden in life to have the MS I have, than it’s a lot better than some of the other alternatives. I try to stay positive and not dwell on the future too much.”

“I guess it’s kind of scary if I do think about it. I don’t dwell on the future; it’s going to be what it’s going to be.

For now, his future revolves around his family: He has two daughters, and one is getting married in August.

“I’m really lucky because my wife, she takes care of everything that I can’t do and she’s very supportive,” he said. “My friends know, too, now. I go on golf trips and they tell me, ‘You might not want to do that, probably don’t want to do that.’

“It was tough for her for a long time,” Ludwikowski said. “She had to adapt to a lot of things, too. One of the biggest things was my cognitive memory. She’d say something, and I wouldn’t remember.”

Schuster also battles memory loss and said he will sometimes look at a basic object, such as a towel, and not be able to remember the name.

While their disease has forced these men to give up sports and tone down their daily activities, their ability to fight stays strong.

“You have to keep fighting. I’ve always been like that, I’ve always had that attitude that I won’t get beat. Eventually it’s going to happen,” Ludwikowski said, pausing. “But, it’s changed my life in a lot of ways. A lot of people have life-changing things happen for different reasons. Maybe this is just the good Lord telling me ‘OK, you’re not so hot.’ I don’t mean looks-wise, but, you know, it’s just a way to wake people up.”

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2 Responses to “Men with MS struggle with lifestyle changes”

Michael Pearson

This is the first time I’ve ever responded to another MS person. I too was diagnosed in 1996. MS has had a huge impact on my sense of self worth. I had to stop working in 2007 after finally starting to feel good about my career. I get disability, but it barely pays the bills. I stay as active as possible. I can’t hike or play sports anymore, but still walk and lift some light weights. I used to be a distance runner.

What I really need is a way to make money on the side for financial and mental stability. My fiancee is at her wits end with my memory issues and is hinting about leaving me. I am really lost right now.

Hi Michael.
I understand your feelings about life with MS. I myself am living in a country where this disease is very rare. I was diagnosed in 2004 and I do not get any disability benefits. I walk with a cane. But still I think work is very important in a Man’s life. It gives you a sense of pride and achievement. I think that raising a family in our condition demands lots of thoughts and planning.
Money is already a difficult issue for every one.
It is likely to become more difficult with MS and as we get older. I suggest you focus on getting back on your feet financially before embarking into these projects.